Not sure where to turn!

[Hippychick11]

Hi everyone,

I was diagnosed with Fibromyalgia 15 years ago and have been managing constant pain, particularly in my fingers and toes, which becomes severe when they’re cold. I also experience ongoing pain in my back, especially my neck, I am constantly tired and I’m really struggling at the moment.

In addition, I’ve had IBS since I was 10 and have dealt with anxiety for many years. I also experience palpitations regularly. I recently saw a sports physiotherapy consultant who arranged several blood tests. The results showed:

ANA: Weak positive

ENA: Negative

Hypermobility (which I know I have)

Seropositivity with a weak ANA titre

POTS Syndrome

Unfortunately, my private health insurance has ended, so I’m now starting over with my local GP.

Although I don’t get a butterfly rash, I occasionally develop large patches of dry skin resembling psoriasis, especially when I’m stressed or in the summer. Recently, I’ve noticed a hive-like rash after sun exposure.

My birth father has Lupus, and I strongly suspect that this may be what I’m dealing with as well.

I would be so grateful for any advice, insights, or suggestions as I navigate this.

Thank you all so much!

[LalSD]

Happychick11- if you manage to get referral to a specialist, please ask to start plaqunil or equivalent medicine, hydroxychloroquine to see if your symptoms improve. Vitamin D levels also improve joint pain. Hope you get better. L x

[Hippychick11 in reply to LalSD]

Thank you for the advice and I have just seen a new GP who has referred me to a rheumatologist. x

[lufibabe]

Hi..As you have a strong family history with symptoms of Lupus (which does overlap with Fibro), insist on referral to rheumy. Make a list of all your symptoms as well.

Hopefully you get answers. Wishing you all the best

[Hippychick11 in reply to lufibabe]

Thank you for your advice and yes it has been approved for me to see a specialist and I am on the waiting list. Hope you are well and thank you again x

[Cath24]

It's possible that you have UCTD, given your results and symptoms, but not necessarily. Some people have very high ANAs, negative ENA, some symptoms of lupus, but not enough to be diagnosed with lupus (and most people fit in the UCTD without very specific lupus symptoms).

1 - When did you last have full blood counts? Address any deficiencies. Most of us are deficient in vitamin D, especially with autoimmune conditions, fatigue, and stress. It's crucial to have them checked. If you cannot, then you might want to check with your GP if you can take 4,000 iu of D3 - always make sure you take that with K2 and magnesium - it has to be a combination of the 3 or it won't work and can even be dangerous to take vitamin D without K2 and magnesium. Find a brand that contains no fillers - you will pay a bit more but it's worth it.

2 - Are your iron levels adequate? Do you have an electrolyte imbalance? Your blood test results will show everything. First step is to address any deficiencies, and it doesn't happen overnight, it takes a good while for your body to restore itself.

3 - Are your white blood cells decreasing? What's your platelet count? - your blood test should show this too and is a crucial piece of the puzzle.

4 - How much sleep do you get? I say this as someone who had extreme chronic stress (the worst possible situations you can imagine happening to a person in life) and insomnia I am convinced it pushed me over the edge. I feel a million times better despite a rocket high ANA since addressing both issues - sleep and stress. What works for you? I love yoga and sports. I find water therapeutic and enjoy swimming, and saunas work great too. It used to anger met when doctors blamed stress for everything happening to me, and they still shouldn't do this, but it is a huge factor. It's difficult for doctors to diagnose us accurately and help us if we haven't addressed the basics. I didn't know how damaging stress and insomnia were until I explored it and found out that chronic stress can lead to immune dysfunction and eventually even an autoimmune condition. That's because if your body is in a permanent state of high alert and stress, and your cortisol levels are constantly high, it will eventually go crazy.

5 - What's your gut health like? The following is all just general info and recommendations I got: I would try to eliminate (or cut down on) gluten and dairy to start with. Both are known to cause inflammation, which is something we want to reduce. Swap omega 6 inflammatory seed oils (vegetable oils) for olive oil. Maybe swap red meat for healthy fish like sardines or mackerel (canned is super affordable and very healthy! Just make sure it's in water with no added salt, or in olive oil). Instead of pasta, try protein-rich anti-inflammatory buckwheat (it's gluten-free despite its name, it's not wheat). Dramatically cut down on added salt (you get plenty from fish and other sources). Snack on omega 3 healthy walnuts (if you have no allergies). Quercetin is important to fix your immune system - try capers (rinse the salt off first), and organic apples - both are naturally high in quercetin. Plenty vitamin C, crucial for your immune system - lemon juice - squeeze it in your water in the morning too, and take it with your iron supplement if you need one, to help absorption. Avoid sugar completely - stick to fresh whole fruit - and don't destroy the fibre by juicing them. Forget alcohol if you drink. They say to cut down, but I believe that no amount is healthy, having read the evidence and most scientists agree it is harmful. At least try to at the start. Healthy greens like broccoli - eat the whole thing, not just the flowers, and it can be eaten raw. Have fun experimenting - learn to make your own ice cream with coconut milk, unpasteurised natural honey, and fresh fruit.

So I would recommend addressing the basics while you get help - sleep, stress, diet, sports. I wouldn't dread things or expect the worst - whatever it is, it can be managed. No one here is doomed! If anything, it teaches us to be kinder to our bodies and help others along the way, as there is more to life than autoimmune conditions, and people who seem to be doing great or don't develop these conditions won't necessarily be ok tomorrow if they carry on not being mindful about their health. When it first happened to me and I was told I had an autoimmune condition (and I am still in the process of receiving an exact diagnosis), I was very bitter and envied people who seemed well, who seemed to be able to eat whatever they want and feel fine. Then I realised that whatever I have doesn't define me or how healthy I am. Is someone who gets away with getting drunk every night without getting immediately sick, healthier than someone with lupus who manages their condition well and takes a holistic approach to their health? And with this I wish you all the best, take it easy and don't let this take over you. You are much more than your symptoms, and you can heal - the human body is amazing and strong, we just need to give it a little more help! x

[Hippychick11 in reply to Cath24]

Firstly I want to thank you so so much for all the information and advice. I used to work in natural health and some of it I already know and do but I was unaware of quercetin and electroltyes...I am going to cut out sugar that's for sure. I have been going to the gym which I can't do anymore, so I am starting swimming and carry on with my daily walks. I really can't thank you enough and it is so refreshing to hear something positive. Bless you x

[Cath24]

Quercetin is powerful- but please be careful if you choose to supplement - and check that your ferritin and iron is not low or borderline low - as quercetin is a known iron chelator! I stick to quercetin-rich food without supplementing, as my ferritin is borderline low (common with autoimmune conditions, we just use up more iron to deal with inflammation and we might also have issues absorbing it in the first place) and I would rather play it safe and my GP doesn't provide advice on supplementing.

Here is a reliable source which will show you how quercetin can help autoimmune conditions, but also what you need to be aware of first - this can help you decide if supplementing is right for you, or if like me you will play it safer and stick to quercetin-rich foods: pmc.ncbi.nlm.nih.gov/articl....

Cutting out added sugar and sweeteners... It's like cutting out salt.. feels bland at first, but just persevere and food will taste as it should before you know it. You will know it's working when types of fruit you once thought to be bland or bitter finally taste sweet again! Sounds like a fair trade-off to me - being able to enjoy all that beautiful fruit again - and dramatically reducing inflammation.

I no longer regret skipping the gym. It’s easy to get injured by applying pressure in the wrong places, and having to constantly monitor my extra dietary needs was exhausting, never mind that I was craving carbs all the time. Many ordinary athletes or gym-goers consume excessive sugar to keep up. Looking fit doesn’t always mean being metabolically fit. Professional athletes have experts designing their nutrition and training, but most of us don’t. On the other hand, swimming is therapeutic and low-impact, and walking - especially hillwalking (or stairs, if hills aren’t an option) - is free. Centenarians in Blue Zones have walked all their lives. I’ve yet to hear an Okinawan praise the gym! Yoga/pilates? You just need a comfortable spot and a mat. The best exercise out there is free.

If you or anyone reading this has more tips, please share - I love learning and passing on knowledge. Lastly, remember: we DO have control. Autoimmune conditions aren’t a life sentence, and remission is possible, no matter how severe the case - just look at Selena Gomez and how far she’s come. Sending you all my wishes and hope you will also use your knowledge in natural healthcare to heal. Believe in yourself xx